In the "Ethical Inquiry" series, we examine ethical questions, highlighting a broad array of opinion from journalism, academia, and advocacy organizations. Our intent is to illuminate and explore the complexity of some of the most vexing ethical questions of our time.

In this installment of “Ethical Inquiry” we will focus on testing for Down syndrome.

Prenatal testing for Down syndrome creates a series of ethical questions related to choice, autonomy and quality of life.

First, there are issues of reproductive choice: providing women with the freedom to choose what to do with their own bodies.

There are also questions of how genetic testing impacts the life of individuals with Down syndrome. Does screening for Down syndrome affect how we value the quality of life for people with Down syndrome? How?

Inadequate Counseling and Information Around Screenings and Tests

Some contend that prospective parents need more and better information to inform their decisions regarding screening and testing and the results of screening and testing.

After receiving test results, some parents don’t receive information about future quality of life for a child with a disability, or information on the positive and negative aspects of giving birth to a child with a disability. Some parents may learn this news having never met or known a person with Down syndrome.

A Path Forward

One path forward is through genetic counseling to present a thorough and accurate description of the whole picture of what life with Down syndrome is like to parents when they learn that they are expecting a child with Down syndrome.

Some contend that genetic counseling for parents expecting a child with Down syndrome should fully inform them about quality of life for individuals with this syndrome, as well as the variety of support services available.

Final Thoughts

The issue of prenatal genetic testing generally, and testing for Down syndrome in particular, is ethically complex. Screening and diagnostic tests for Down syndrome are now recommended for all expecting mothers, and the technology of testing for Down syndrome and other conditions is likely to continue to advance. The ethical dilemmas surrounding this issue will continue to be faced by prospective parents and by society at large.

Additional Resources

The Down Syndrome Diagnosis Network supports parents who have recently received a diagnosis for their child or unborn baby by connecting them to other families touched by Down syndrome.

The Lurie Institute for Disability Policy at Brandeis University has a mission to promote inclusive and effective policies that improve the well being of children and adults with disabilities and their caregiving families.

A Special Note

﻿This Ethical Inquiry is not medical advice nor is it a comprehensive set of information about these issues and related concerns. Do not make medical decisions on the basis of this article. Consult your physician and/or a qualified genetic counselor.

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